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Posted 12/21/2011 7:16 PM (GMT 0)
Caligirl83-

I live in Western New York. If/when it comes to surgery, my intention has been to explore my options at the Cleveland Clinic. It's about a 3 hr drive from my home and I have read some positive reviews on the ostomy forum. Also, I work with health analytics as part of my job and the Clev Clinic seems to score among the top hospitals in the country for Gastroenterology. If you have any recommendations of surgeons in this general area, that would be very helpful.
Posted 12/21/2011 7:43 PM (GMT 0)
You might want to check out www.j-pouch.org They have discussion threads for jpouchers, kpouchers, and ostomates.

Sue
Posted 12/21/2011 8:29 PM (GMT 0)
I had my surgery two days ago and I already feel a million times better than I did with UC. I had it done at the Cleveland Clinic with Dr. Dietz. I have not felt this happy in a long time.
Posted 12/21/2011 8:45 PM (GMT 0)
Congratulations bostwis. I am so happy you're feeling better. Thanks for updating us :)

Happy Holidays!
Posted 12/22/2011 2:46 AM (GMT 0)
Bostwis1... Yay for you! I am so happy that two days out and you are doing great! Was your surgery done microscopically?
Posted 12/22/2011 2:49 AM (GMT 0)
haha.. sorry for the typo on the last post. That was supposed to say LAPROSCOPICALLY
Posted 12/22/2011 3:41 AM (GMT 0)
It was done open, but he makes a very small horizontal bikini cut so it is healing very quickly as if done lapro. I start a soft diet tomorrow and if everything goes well I will be home Saturday. I feel like a new woman :)
Posted 12/22/2011 4:18 AM (GMT 0)
Awesome christmas present (if you celebrate)
Posted 12/22/2011 2:38 PM (GMT 0)
Indycat23, Hi, I'm also in WNY right now.
I think our choices here for GI docs is very good, my GI is wonderful. I tried the CCFA support group which I found to be of no use at all. I think it would be nice to have a network of UC people locally. I've heard nothing but good things about the Cleveland clinic, but I think the care here is just as good.
Anyway, hope your taper goes well.
Posted 12/22/2011 3:37 PM (GMT 0)
My surgery was hand assisted laprascopic. As I said in another post, I wish I had done it after first year with UC. I'm 65 and the drugs just never worked on me. I was fearful of surgery. Everything depends on the quality of the doctor.
Posted 12/22/2011 3:45 PM (GMT 0)
I had UC for about 10 years and started to develop precancerous changes, so I had to have mine out. Mine never went into remission fully and I was on all the drugs and nothing really worked. I had thought about surgery but the precancer made up my mind. I had it out July 09 at Cleveland Clinic. It was a very difficult road. I don't think I was fully prepared by anyone about the challenges it would bring. Everyone made it seem like you get it out, you get a bag, you get reversed, and boom - you're almost normal. I still have the temporary bag. Had a failed reversal, numerous hospitalizations for dehydration and malnutrition (was not absorbing anything) and had some kinks inside so we have to wait to try again. That said, life is overall better because I am not running to the bathroom every 5 minutes. Honestly, having an ostomy is kind of like a lateral move from having UC - you still have ups and downs. But, like I said, overall, life is better. And on my very good days, I wish I had done it sooner.

Wish you luck!
Posted 12/22/2011 4:35 PM (GMT 0)
You must have a thorough understanding with your doctors on the process of surgery and the potential issues associated with it. Unfortunately, too many docs are so busy they don't take time or have time to spend a lot of time answering questions.

With me, I followed my surgeon's instructions to the letter while in and outside the hospital. Nurses told me that I would feel better and have less problems IF I got out of bed and walked the halls. Several hours after surgery, I was up and walking with my little christmas tree of pumps and drains etc. But I walked despite discomfort.

I did not have a bag or a j-pouch. My colon was reconnected to the rectum with the diseased portion removed. There is no one size fits everyone scenario. I was fortunate in many ways.

But drugs were ruining my liver, my health generally. If I have a recurrence, and I might, then the surgeon can take out the entire large intestine if needed. But I hope not to have to take in the drugs I took over 3 years that simply did not work for me.
Posted 12/22/2011 7:31 PM (GMT 0)

bostwis1 said...
I had my surgery two days ago and I already feel a million times better than I did with UC. I had it done at the Cleveland Clinic with Dr. Dietz. I have not felt this happy in a long time.


That's so great! It's amazing isn't it that you feel better instantly after the diseased colon is gone? I felt instant relief too even thru the post op pain. Congrats on getting your life back! :)
Posted 12/22/2011 8:24 PM (GMT 0)
BeatUC,
Nice to see a fellow WNY'er in here! Since my UC has not been under control (except when I'm on Pred) from diagnosis I've been thinking about getting a second opinion. May I ask who your GI group is? Mine belongs to Buffalo Medical Group. I'm not unsatisified with my GI and I believe he has followed the appropriate course of action. I just want to make sure that there is not something that is being missed in my treatment.
I agree that WNY has some decent facilities but everything I have read indicated the Cleveland Clinic has better outcomes compared to the national average. It's not that far away from WNY and it seems like the discomfort on the ride home would be manageable so I'd probably opt for that facility even though doing it locally would be easier.
Posted 12/22/2011 8:36 PM (GMT 0)
Dr Wells (Wells Gastroenterology) -he's wonderful, very up on current, newer treatments.
He saved my colon and my life really.
And yes the Cleveland clinic has a great reputation. It would seem to me that having a good local GI and also utilizing the Cleveland clinic would be a great way to go.
Best of luck to you, I wish there was a way to give you my email. I'd like to share some of my experiences that were successful and also stay informed as to how you make out.
Posted 12/23/2011 6:25 PM (GMT 0)
Not sure how to exchange emails but I'll make sure to update as I go along.
Posted 12/30/2011 7:35 AM (GMT 0)
HI CaliGirl - I have just gotten back into this thread to see what is going on. I have heard that SHARP in SD has no colo/rectal surgeons, and I have spoken with a few prospective (now patients) from SHARP that have come over to UCSD b/c of that reason, and in fact I heard one horror story about how a general surgeon at SHARP was trying to scare someone away from jpouch/reconstruction as he said it was never successful. I ended up at UCSD b/c the surgeons at Scripps wouldn't take my HMO and UCSD would. Even if they are not in your network, UCSD will work with most carriers since there are no colo/rectal doctors at Sharp. I haven't heard of Dr Ishto but I can ask around. Also, if you want to get into Dr M for a 2nd opinion most carriers will (I think they have to) allow you to go out of network if there are no specialists in your network.

I hope you are doing well!!
Posted 12/31/2011 10:18 PM (GMT 0)
That is quite interesting to hear because Dr Isho is a colorectal surgeon that did his fellowship in colorectal surgery. I just met with him 2 days ago. I drilled him with questions and I couldn't help but wonder how long her had actually allotted for my visit, cause I had a lot of questions. Thankfully, he does a lapro approach!! :)

He has done over 100 of these surgeries and my friend, an OR nurse at Sharp, talked to the staff that works with him and they are very confident in his work, which says a lot. I am not sure where someone got the assumption that there are no colorectal surgeons at all in the Sharp system. Sharp is a big group, that would be ironic. Nonetheless, we now know there is.

I spoke with my insurance and the doctors that I've seen recommended in SD from this site are not covered by my insurance. I guess I could call again and see who they would/could recommend for colorectal surgery and maybe find a loophole that way, just to get a second opinion. I have confidence in him because of what his staff has had to say. When you are in the case first hand, you know who you would and wouldn't let operate on you! As far as liking your doctor, bedside manner means nothing once in the OR. You want a physician that is good at clinical and is the very best at operating, not necessarily interpersonal skills.

I've worked with some very nice physicians who were very kind and caring but I would never let work on me. Then there is the jerk of a doctor who I would want to do my procedure because they are the very best hands on!
Posted 1/1/2012 4:55 PM (GMT 0)
It is true that having a great bedside manner isn't as important as clincical skills, but this is a big surgery and a big step and you do want a dr you feel comfortable asking even the dumbest questions too.
I'm glad you liked the dr you met! Good luck!
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